Define, rather than demean, to heal

It was an ordinary afternoon in 2011, and 9-year-old Zhou Xi was on her way home, together with her father, still thinking about the exam that she had in school. Suddenly she felt a bang on the head and fell unconscious.

As she woke up she was lying in bed at home. Her father says that she suffered convulsions, with saliva coming out of her mouth. Zhou was rushed to hospital and was diagnosed with epilepsy.

Names matter

For 10 years, Zhou has been struggling with the disorder. Her family took her to a top hospital in Xi'an, capital of Shaanxi province where they live.

Her father stood in the queue for the entire bitterly cold night to get a chance of seeing the doctor. She got a prescription and took the medicine regularly, and is now spending her first year in a local university, with the condition under control.

The disorder is frequently called yang dian feng by the public, literally meaning "as crazy as a goat". According to Chen Kui, a neurologist at Beijing Friendship Hospital, Capital Medical University, the exact history of that name is no longer traceable.

"In some places, it was even called 'pig craziness'," Chen says. "The comparison with farm animals is so bad that it made patients feel they were treated like animals."

Whenever hearing anyone utter that word, she was reduced to tears; she did not tell her classmates that she had the disorder, and when someone asked her about the medicine she took, she said it was vitamins.

"Now I am OK with it, but you can imagine how hard it is for a child to accept that", Zhou says,"And we must allow grown-up patients to feel bad, too."

A vicious circle

An An experienced an epileptic fit in 2019 when she was on an internship. Things were better for her because her classmates had more medical knowledge, but still she would tremble at the word yang dian feng.

Xiao Bai, another 19-year-old patient who first suffered from the disorder in primary school, is much more determined. "I bet I would kick anyone who mentions the word to me."

On a popular job show Attractive Offer in November 2021, a 50-year-old epilepsy patient, who had lived with the disorder for 29 years, asked the doctors in the program to launch a call to the public to not use the insulting names any more. Tao Yong, a senior ophthalmologist at Beijing Chaoyang Hospital, who was on the program, launched a campaign on his micro blog, which has 1.97 million followers.

"Some disorders are difficult to cure, and more difficult to heal spiritually," he says.

"Those suffering from epilepsy are often ashamed when they have an attack in public. The stigma in society is such that patients are not fully healed even after being cured of the disorder."

Chen also says the insulting names might hinder the patient from seeking medical help.

"Epilepsy involves damage to the brain's neural cells and is curable if the patient takes the proper prescription," he says.

"But with the insulting names, some might avoid seeing the doctor to avoid their condition being known by others.

Accuracy counts

Tao says epilepsy is only one disorder that carries an insulting name.

Being forgetful in old age is often associated with Alzheimer's disease, according to the medical list published by the then Ministry of Health in 1995.

However, in many cases it is called senile dementia, which is often associated with "foolishness" or "stupidity" in common parlance conversation.

In 2012, China Central Television launched a survey about selecting a word to replace senile dementia that garnered 1.35 million respondents, of which 500,000 voted for the word "brain degeneration".

The words did gain popularity though, and now the most commonly used name is "Alzheimer's disease".

Psoriasis, an itchy rash on the skin, was once called niu pi xuan, literally meaning "ox skin plague" in Chinese.

Tan Shuai, a doctor on skin diseases at Shenzhen Hospital of South Medical University, says the origin of the insulting name is untraceable, too, but no serious doctor should use the name.

"To use cattle in naming a syndrome implies comparing the patient with the cattle and giving up on the patient", Tan says.

"That should not happen today with modern medical science. We doctors hope to guide the public to learn the formal names of the diseases so as to get rid of the old, insulting ones, which in turn needs the effort of the whole of society."

As well as the insulting names listed above, some conditions are often misunderstood, too.

Depression, a major neural disorder affecting over 350 million people worldwide that can lead to suicide, is often distorted by some as "being just too vulnerable".

Re Yizha, an actress who gained popularity in 2019, once said she had depression via her microblog account, but in the responses, there were several comments asking her why she was still alive.

Furthermore, whenever anyone is found to carry HIV, often, the first response from those near them is to question their sexual relations.

Tao says he has met many patients who were shy to submit their materials to him, and when he saw the materials he always found a "HIV positive" sign on it. That only prevents the patients from entering the hospital and might cause more infections.

Upon learning the theme of this story, Zhou says she has some words to share with the readers.

"For the public, I hope people can avoid mentioning such words, because you don't know whether a patient is there beside you. For anybody suffering from such conditions, I hope they can stay strong and be optimistic about it. The day will come when all discrimination is gone."

Pseudonyms were used for all patients mentioned in the story.

Yang Xiaoheng contributed to this story.